Monday, April 28, 2014

It was a good day

Today we set out to go to 2 different Dr. appointments with the 3 boys in tow. I made the appointments under the impression Max and Tate would be back in school, but it turns out they had an extra day of school holidays. I was so grateful they did. I wasn't ready to send them back. I had a pretty emotional Sunday and still wanted to spend time with my boys before school started up. 

Going to church for the first time since my surgery was harder than I thought it would be. The entire time I was sitting in sacrament meeting, all I could think about was everyone feeling sorry for me. I know I was just being silly, but it's seemed so real in my head when I was conjuring it all up while sitting there. Just as the meeting was coming to a close Porter started to get a little antsy so I quickly told Joe I would take him outside and to meet me at the car.... I guess it was basically to avoid talking to anyone. Then Joe left around 12 that afternoon for a work trip. It hit me how much that guy means to me. I was having separation anxiety with him going for the first time in a long time. I need him and I feel so lucky I have him. It was a hard day for me, I was thinking about the next few months and getting overwhelmed with what's to come. I'm one of those people who thinks their life is in shambles after dark when they can't sleep, this is the feeling I had the entire day..... I knew if I could make it until this morning everything would be okay, and guess what, it was even better than I could have thought. 

I arrived early to my first appointment so I decided to walk across the hall to get my blood work taken (I have to do this before I start my chemo). That was easy. Then onto my physical therapist. She's amazing and calmed all my fears of lympedema. I'm healing normally and she says my range of motion is getting back to normal. I still can't lift more than 5 kilos for 2 1/2 weeks on my right arm and 3 1/2 weeks on my left arm. She gave me this crazy compression garment I have to wear 4-6 hrs per day so the fluid will stop building up in my back. It's ugly. 

We then drove around a little, took the boys to lunch and made it back to the hospital just in time for my appointment with my plastic surgeon. He says I'm healing well, and I agree with him. I'm very surprised at the results of everything already. He also gave me the go ahead to drive, this made me so happy. He drained some fluid from my back and took off all my tape. Then he asked if I wanted to be blown up (a fill of my expander implants) of course I said yes and watched as my boobs grew before my eyes. Pretty cool! He put 100 cc of saline in each side. It was super easy and painless, now it's a little tight, but manageable. 

While I was in my appointment, my mom was supposed to be taking the boys to the park across the street. I went outside though and they were no where to be found. After walking around for about 15 minutes I finally see my car come around the corner.... I guess my mom got stuck driving and couldn't get back to where she wanted to go because of a bunch of one way streets. It turned out to be a good thing for me though and I think it was supposed to happen like that so I could go play at the park with her and the boys.  The sun was finally out and it was a pretty awesome park with a hill top slide (maybe 100 feet down the hill) The boys were in heaven and it was so fun to listen to their laughter and to watch them enjoy being little boys. My mom even got in on the action and went down on the slide with them quite a few times. I love being a mom and these boys make my life better. They make me better and they make me know everything is going to be okay. 

Friday, April 25, 2014

Perspective

I feel a little bit like I am not myself anymore. This whole process has already changed me physically, emotionally, and spiritually. I'm still me, but a different me. I feel sometimes like I'm walking through cloud and other times like my perspective is so much clearer.

Yesterday when I was in the doctors office and the nurse was changing the bandages, I felt like I wasn't looking at me. This wasn't me and it wasn't my life. When I looked at the scars on my back and the scars on my front I cringed and feel like this wasn't my body, like I was for sure looking at someone else.

When I feel the port that will eventually deliver my chemotherapy it freaks me out. I can barely touch it and it is now a part of me. There is a foreign object under my skin and it feels so strange. I know my scars are going to heal and get better and eventually they won't be as noticeable, but I can't get used to the fact that they are now a part of me. Something I will always have to remind me of this time in my life.

When I read others stories or think about my treatment plan or I sit on the phone making more appointments and talking to insurance company about what's covered, I'm just going through the motions. I think to myself over and over again, Is this real? Is this really my life? It's like I'm walking through a cloud.

Then there are moments like tonight as I got my boys ready for bed, that things seem so clear. How strong my love is for those sweet boys and the connection we have with each other. HowI could stare at each one of them for hours and not be bored. How I could listen to their stories and thoughts and try to tell them how much I love them without really being able to explain to them the extent of what I feel.

When I am outside and I feel the sun on my face and the beauty all around me, I feel like things are moving so clearly in slow motion.Things that mattered to me before don't really seem to matter to me anymore. It's crazy.

I find clarity in the moments that make me appreciate my life and all the many blessings I have. I am able to find more beauty in the little things. These moments help me to see and to understand that there is a plan for me and I am going to be able to overcome this trial I have been given and be better because of it.

I know it's going to be hard and Joe and I keep talking about how important it is for me to realize that all of this is going to be temporary. Feeling terrible through chemotherapy is going to be temporary. Our bodies are amazing and I know I will be able to bounce back and I just pray I can remember that when I am in the midst of it all.

Silly kids

Joe says I need to post more pictures on here. He made me realize I haven't been taking very many pictuers, these are two my mom took when she and my dad took the boys to hold Koalas at Cohunu Koala Park. They both made my day when I saw them, so I thought I would share. 

Wednesday, April 23, 2014

The next step...

Lets start by saying this. I love my oncologist. She is pretty amazing and has been involved with countless clinical trials. She knows her stuff and she made me, Joe and my parents feel so confident in my treatment. She's one busy lady. Her office was packed and she was running over an hour behind today. Once we finally got into see her, you would never know there were 5 more women in the waiting room that were already an hour past their appointment time. She made us feel like we could take all the time in the world and ask as many questions as we needed. We didn't feel rushed at all. She walked me right through her plan for me and explained why she chose each treatment. I feel completely comfortable with it all.

So here goes, I'm going to start Chemotherapy May 7. The type of chemo is called TCH: Docetaxel (T), Carboplatin (C) and Trastuzumab (H). The chemo portion of my treatment will be given in 6 cycles over 18 weeks. I will also start the drug Herceptin which specifically will target the HER2 positive part of my cancer. The Herceptin will be given along with my chemo every 3 weeks, but continuing on over the next 12 months. Luckily the Herceptin has minimal side effects, the only real side effects (having to do with my heart) will be lessened because I am being given a chemo treatment that is less likely to cause heart damage.

From what I understand, if I were to do nothing from this point forward (have a mastectomy with no treatment) the likeliness of my cancer returning is around 40%. If I add in chemotherapy/herceptin that number goes down to about 10%, then I add in my hormone therapy that I will need after all of this that number goes down to around 7-8%. This is still with out radiotherapy which is being recommended, but I need more numbers and more information before I go forward with it. I want my best chance of a cure, but I also don't want to put my body through more than it needs to go through.

The way it was all laid out for me made me feel like it's going to be hard, but it's going to be doable. She told me I can still be around my kids (I was worried about getting sick) she told me I don't have to worry about the kinds of sickness they will be getting. She said I can still travel (as long as I do it after my first 2 rounds of chemo so we will know how I'm responding) and I can still do all the things I was doing before. She said it's actually better for me to do all the things I was doing before. She said I will need help because I will be tired. What I took from it is to try to do as much as I am able. Basically if I can do it, then I need to do it. I think part of this is for my sanity as well. The more normal I can make my life, the less depressing it will be through all this. I'm hoping that with her telling me and me feeling like I'm going to be able to do things that I'm not setting myself up... I really hope I can handle it all well. I think I can, but you really never know and everyone reacts so differently to chemo. With chemo, you get very forgetful something that can be called "chemo brain" or "chemo fog" in order to help this not be so bad, she told me keep my mind busy. To do puzzles, read, have Joe quiz me on things to keep my brain active. An example she gave was to make a grocery list then try to memorize the first 8 items on it, then to take it to the store and try to get the memorized items first without looking at the list. Not sure I could even do that now....

As I left there today, the only thought I really had it it's all going to be okay. I feel comforted for some reason and I feel like I can do this. I can do hard things. I feel grateful in some ways because it could have been so much worse. She told me I had early breast cancer (I'm stage 2 grade 2) and most women who are my age when they are diagnosed they are already at a grade 3. That right there makes me feel so blessed. Again I feel like I'm going to be okay. For some reason I feel the need to reassure people of this. Now, I'm starting to think more along the lines of what am I learning from this and how can I become better or help others because of this trial I was given. I definitely have moments when I'm down, but I know if I push through and ultimately can come out a better person then it will all be okay.

xoxo,

Tori

Goodbye forever

The last few weeks the first thing I do when I wake up is I check the levels of my drain or drains. I knew if the output was below 30mL then there's a good chance I would be getting them out.

Early last week I had my second to last one removed and I thought for sure I would have my last one removed at an appointment I had later that week. I was wrong, my last drain was still in after that appointment, through the weekend and into this week. This weekend it was terrible. It was still draining 70 mL every night and on Sunday night it was causing me so much pain I about pulled it out myself. I even went as far as to have Joe clip the stitch that was holding it in because it was so painful. That relieved a little bit of the pressure, but not all of it. After that stitch was out I had to be extra careful, we used my bandages to keep it in. 

Finally, I woke up today and it had only drained 25mL... it could tell it was going to be a great day! I was so excited I called the home care nurse first thing and made an appointment to have it taken out. 

Now I feel like a normal person with nothing to drag along wherever I go. My boys were the cutest. Max noticed right off because he heard me telling my friend about it. When my mom mentioned something to Tate about me not having my drain, his big eyes lit up and he was so excited, he said "Really, let me see Mom" in such an excited voice. We spent tonight snuggling together one boy on each side. Something we couldn't do before. The boys even fell asleep with me downstairs, I was loving it. They are getting so big, but having them want to be close to me is one of the best feelings in the world. I hope they never outgrow wanting to snuggle with me. I love them all so much.

xoxo,

Tori

Monday, April 21, 2014

Long road

After my diagnosis March 17, I didn't have much time to even think about what was to come. My main focus was on choosing the right doctors to remove the cancer from my body. I am so grateful  and happy with the choices I have made with my doctors. Grateful I took the time to research and find out who would be able to give my the best chance of a cure. I was admitted to the hospital and had my first surgery just over a week and a half after my diagnosis. It was all so surreal.

Things are just starting to sink in now. I have been home for about a week from the hospital after being in for a day shy of two weeks. Those two weeks went by so fast and I wasn't ready to come home until the day I left. Life is real now. While laying in the hospital it's easier to think of your life and your family when you know they are okay and taken care of. It's so much harder to be home now and to not be myself. I can't do the things I did before. Just Saturday we had a great day as a family touring the city and going to the famous Fremantle prison. I was worn out after and I didn't even do anything.... someone else pushed porter in the stroller because I can't, someone else held him when he wanted to be held because I can't, someone else changed his diaper and chased him around. Even though someone else did all the things I was used to doing I was the tired one. I was the one who had to come home and rest. It's all so real now, I've spent the last two days in my recliner. My last drain has been sitting on nerves so it hurts to move. I had Joe cut the stitch that was holding it in last night and that relieved a little of the pressure and pain, but it's still there. I now have to be very careful because it's being held in by two bandages.

The more I sit here and think the more scared I become about what I have ahead of me. I know it's going to be a long road and it's going to be hard, but I think it's just starting to hit me. I have time to think and research and read other peoples experiences through all this. I just pray that I can handle chemo well. I want to be a  part of my kids lives. I took things for granted before, I hated doing laundry and cleaning my house, and that's what I want to be doing now. I watch my mom (I could not do any of this with out her and am beyond grateful she is here) do everything I used to and I ache to take my kids out to the park and run with them. It's their school holiday (like spring break) and my sweet boys are watching their mom sit in a recliner. They are so sweet and so concerned about me that the hugs they give me are so soft I can barely feel them. I'll tell them they can squeeze tighter and they get excited and say okay mom, I just didn't want to hurt you.... I don't want them to be worried about that. I tell them how sorry I am that I'm not out there playing with them and taking them to do fun things. They are the most understanding little boys I have ever seen. I love them so much my heart could burst. I hope they know how much I love them and how much I want to be there with them. I pray every day that I can be cured of this terrible disease and get back to the mom I was.

I have faith I will be okay and I will get through this. It's just hard to keep perspective all the time. It's hard to stay positive all the time. I try, but it's not easy.

xoxo,
Tori

Saturday, April 19, 2014

How the boys found out I have cancer

Something I feel the need to write down and document here is how the kids found out I had cancer. Joe and I were having a really hard time with when the best time was to tell them. We were putting things off to shelter them.

A little background on why we felt the need to shelter them... In February, as a family we traveled back to the US from Australia because we has received word that Joes mom was losing her year long battle with cancer. We knew we wanted to be there at this time to say our goodbyes and be with the family, so we hopped on a plane and endured the 25 hour flight to get there. We arrived just in time for a very emotional goodbye with her. She knew we were there and was still coherent enough to call us by name and to hold us in her arms so we could sob together. We miss her everyday and the last year as we watched he battle this terrible disease my boys were there watching too and asking questions. My boys watched their loving grandma go through chemo and lose her hair, they watched her slow down, they watched her go from being their active, gift giving, babysitting anytime, loving would do anything for them grandma to being weak and tired and finally to her laying there saying her sweet goodbyes to them. She was only 56 and in my opinion things just aren't supposed to happen like this. As a family this was one of the hardest things we had endured until now and she passed away only a month before my diagnosis. It was too fresh. 

This is the reason we felt we needed to be super careful about using the word cancer. My boys knew nothing about my cancer until about a week and a half after my diagnosis. All my doctors appointments were being made while they were at school. Max was the first to catch on that something wasn't right when I had to cancel a field trip I was supposed to go on with him for an appointment with my surgeon. How it works here and especially with the surgeons is they make the appointments for you and you are working around their surgical schedule and when they are in the office. The only time I could get in for my next appoinment was during the field trip. I was heartbroken. I had been looking forward to it and so was max. I had to tell him and he kept saying just change it mom, it was hard for him to understand why I couldn't and that made it harder for me. It's all I could think about. I felt terrible. Even dropping him off that day in his adorable olden day clothes, all I wanted to do was hop on that bus with him. He survived though. When u found out my surgery was April 1 and coming up quick joe and I explained to the boys I was having surgery (no mention of cancer) We talked about it quite often. The night before I went into the hospital as I was tucking the boys into bed I started explaining to them more of what was going to happen and what to expect. I told them I would leave for the hospital before they woke up and that I would go in for surgery to take something out of me chest that's making me sick. Max then asked if I would be able to talk when I woke up or if I would be like grandma. I explained I was going to be just fine and the differences in the situation. They then asked why grandma couldn't have surgery to make her better. I explained more of this to them. They told me how much they missed grandma. I told them I missed her so much too. After a short pause Tate speaks up and says to me Mom, I really wish you didn't have cancer. I was shocked, this little boy is 5 years old and through all of this figured it out. I was so grateful he did. For me it was a tender mercy that I didn't have to be the one to say those words to him. I went on to tell them both I wish I didn't have it either, and also explained that I'm going to be just fine. The doctors will take it out and treat it and mommy would get better.

I love these sweet tender hearted boys of mine and an so grateful for the plan of salvation and that families can be together forever. 

Xoxo,
Tori


Friday, April 18, 2014

My boys

I gain so much of my strength and positivity from my sweet boys. They make me keep going.

Tonight I was sitting with Max and he asked me what the hardest time in my life was. Before answering him, I tried to get a little more out of him about what he meant. He told me he thought the hardest time in my life was right now. I agreed with him and said this is the hardest trial I have ever had in my life. I explained that I would get better though and things would be okay. I told him it may seem like a really long time that I am like this, but that things are going to get better and that mommy isn't going anywhere. I also told him I love him and that even if I am sick, I will still be here for him and always ready to talk to him.

I decided this was a good lead up to see how he's doing with everything so I asked him what the hardest time in his life was. He told me it was right now because things were different. He said it's hard because I'm tired a lot and I can't do everything I did before. ... talk about heartbreaking, he was so sweet and so sincere about. I love him so much. He just gets it. It's so hard to see how this is effecting my boys. They are doing super well for the most part, but I can tell Max understands more than Tate and Porter. He's at an age where he is figuring out who he is and asking more questions about life. I just pray I can give them all enough love and I am able to calm their fears. I want their lives to be as normal as they possibly can while I go through all this.

On a lighter note, every time Tate sees me or comes and sits on my lap he very sweetly tells me my hair looks like a boy. He knows this isn't nice to say, but he can't help himself so he says things to go along with it like Mom, your eyebrows and eyes look like a girl, but your hair looks like a boy. Or coming up to me while I am painting my nails and saying ohhhh mom, your nails are soooo pretty, but your hair looks like a boy. What a sweetheart. He's trying to be nice about it at least. He is going to have another thing coming when my hair is all gone, not sure what he's going to tell me I look like then.... maybe Uncle Jevin or our friend Rick?

xoxo,
Tori

Thursday, April 17, 2014

Everything will be okay

Today was great, I was finally able to tour around our beautiful city with my parents. We had the day kid free thanks to my good friend Eliza who is awesome. We ended up having a late breakfast at Voyage. Joe and I love this restaurant and every time we go we get Norma's Salsa. It's amazing, toasted ciabatta, poached egg, avocado, grilled tomatoes and the yummiest herbed feta.

Next, we toured around Subiaco a kind of a trendy suburb with a lot of restaurants and shops. My parents love to drive around so it was a perfect day for me to sit back and enjoy, I only wish I had brought a pillow. All the driving made me tired and a little uncomfortable.  

Then we headed into Cottesloe and they loved the beach there. When you come over the hill and the beach comes into view it's beautiful. One of my favorite things about living here is the views from the road. You can drive up and down miles of coastline and the crystal clear blue ocean is in view the entire time. 

As we drove up to Cottesloe I got a phone call from my doctor. I was anxiously awaiting his call and we had been playing phone tag all morning. I quickly picked up the phone and he explained to me what was discussed with the radiotherapist and the oncologist. He explained to me that they removed 23 lymph nodes during my second surgery and the pathology on those came back clear (meaning there was no cancer in them). This is fantastic news as this will lower my risk for reoccurrence. He went onto explain to me that I still had quite a few risk factors which are as follows...

Number one, my age. Since I'm so young the cancer has longer to come back in the same spot. 

Number two, I have no family history so no one knows why I got this. 

Number three, the size of the cancer. It was a multifocal cancer meaning the largest tumor they found was 18mm. With the way the pathology came back it leads them to believe it's all one intertwined connected tumor which would mean collectively it would be quite large maybe more like 65mm. 

Possible number 4, I'm not quite sure, but there was a little talk of the margins possibly being close in some parts?... not quite sure on that one. 

Because of all of these factors collectively they decided that my treatment plan will include Chemotherapy, Targeted therapy with Herceptin, Radiation, and then the hormone therapy for either 5-10 years. 

The only thing that I had a hard time hearing was that they feel strongly that I need radiation. I was super hopeful that I would be able to avoid having it. Radiation is just another thing to draw out my treatment and to take more of a toll on my body. I do feel so thankful for my doctors and the trust I have in them. They truly have my best interest at heart and are trying to give me the best chance of a cure.

After talking to Dr. Willsher, we headed to grab lunch at a yummy Thail place nearby and then to pick up the boys so I could make it to a doctor appointment.

Joe took me to my appointment at the hospital. It's about 20 minutes away without traffic. I'm glad it's not further, but we have already done this drive a ton of times and I know it's only beginning. My plastic surgeon Dr. Van Beem was out of town, so I met with his nurse. I went in thinking my last drain would be removed only to be told it had to stay in until the drainage goes down. For some reason it keeps draining quite a bit. Frustrating. So I continue to carry my pink bag with me everywhere I go. Then she looked at how I was healing. She removed all the bandages off my back, ouch, and replaced them with smaller strips. I had a little swelling where the muscle was removed from my back so she had to stick a huge needle and syringe into the swelling and drained over 55mL of fluid... double ouch! Then she took all my bandages off the front, I was pretty shocked and scared about what I saw. My boobs looked like something out of a horror movie, with staples holding them together. Seriously like 30 staples in the left breast and 15 in the right. I had to turn my head and close my eyes as she removed each one. She then placed thinner bandages over each incision to keep them together and aid in the healing process. It made me feel much better as the nurse reassured me that my end result will be amazing and that the staples will make the scars super thin and almost invisible with time. I have already been surprised and thankful for the advances in medicine and that I was able to wake up from surgery with breasts. I always thought a mastectomy meant a scar and nothing there. Things have really changed so much and they are able to do amazing things. Joe and I headed to the shops after this to grab a prescription and a few other things and then home to the family. We were so lucky to have a friend bring over dinner again tonight. It has been so nice to be able to spend time together with out the worry of what we are eating for dinner. 

I really feel through all of this that I am blessed. I have had such a great life full of joy. Things have been relatively easy for me and I am grateful for that. I am grateful for my wonderful family and friends that lift me up and keep me going. This year has already proven to be a hard one, but through it all I have developed deeper relationships with those I love. I have been able to grab ahold of what's important and hold it close. I feel like my senses are heightened and I am able to appreciate everyone and everything around me more than I did before. The one thing that at the end of the day makes me feel so much better is when I kneel to pray and feel the overwhelming love my heavenly father has for me. I know he knows exactly what I am going through, he knows my fears and is able to calm them. He is aware of me and I know because of this everything will be okay.

Short hair don't care


Photo booth was fun this morning taking pictures of my new hair. I've been asked quite a few times if  I like it and honestly all I keep thinking to myself is it's better than being bald... seriously just one step at a time. 

xoxo,
Tori

Great News

The doctor called with my results from the auxilla surgery where they removed the lymph nodes from under my arm. They were all cancer free!!!! Yay! I was so relieved. More news to come today. A little about my treatment plan. My doctors are meeting together and putting my case up for review. I'll find out in a few hours what they think. I'm ready for it and to move on to the next step.

Xoxo,

Tori

Sent from my iPhone

Tuesday, April 15, 2014

My first day home

Well, today was my first official day home from the hospital. It was exactly two weeks ago this morning that I headed into the hospital. I can't believe it's been that long. Porter is talking so much more now, he is getting so independent and he wants to explore with the older kids. Because I was gone for so long he doesn't really need me anymore, it makes me sad. He's warmed up to all of our friends and especially to his Mimi. Max and Tate are just thrilled to have me back and couldn't be sweeter. Max made Tate breakfast today and they both help me out a ton. If I needed something they would get if for me, if I had to get up, they would try their best to help me. They are super sensitive to me and try their hardest to be careful when they sit on my lap or give me hugs. They are the best little boys ever.

I am doing okay. It's been harder than I thought it would be to be home. Organizing meds, getting the rest I need, keeping my spirits up. Luckily I have so much help, my parents have been amazing. I couldn't do this with out my mom and dad here. My friend Eliza took my boys all day today, which was so nice. I was able to spend the morning resting in my nice new recliner Joe bought me right when we got home from the hospital. I absolutely love it! It's been so nice to have a place that is mine right in the middle of all the action. The boys can climb into my lap and snuggle me, even Porter knows how to get up to sit with me and then when I need a break they can get down. I'm still able to feel a part of everything without being stuck up in my room which would get lonely. 

I'm still struggling with sleeping so last night I slept maybe 3-4 hours. I'm not sure why, but the pain medicine keeps me up. I take my pain medicine and have a quick little low where I fall asleep then I wake up 1-2 hrs later and I feel like I just slept all night. It pretty much goes on like this the entire night and finally about 6:45 I decide it's easier to just get up. Luckily I'm able to get comfortable in my bed and I can't believe how much I missed it and sleeping next to my sweet husband. 

Daytime wasn't much better as far as sleep. I've never been much of a napper, but the medicine only makes calm, so I am able to rest and kind of zone out. The hospital sent me home with 2 drains so I have home care nurses who call every day to check in on me. After my nurse called and asked about my drains she decided I could have 1 of my 2 drains removed. She came to the house around 12:30 to take it out. It's amazing how nice it is to just have one drain left. I can't even imagine how I'm going to feel once they are all gone. After she left the house, we (my mom and dad and I) headed up to the shops to grab some easter goodies for the boys and the go to the market for groceries. I was not as strong as I though I would be. In fact I kept getting light headed while walking around from shop to shop. I even had the lady at the chemist tell me I didn't look well. I think I was a little pale and sick looking today. We got our errands done as quickly as we could because I waned to have time to rest before the bbq we were having. Joe invited some of our friends over for a sort of welcome home bbq for me. It was so nice to visit with everyone outside of the hospital. We are so blessed to have such great friends here. The bond and love I feel for them is hard to explain. They have been so amazing through all of this and I am so grateful. 

Another thing I've been dealing with through the last few days and it's progressively getting worse is the numbness/pins and needles feelings under the backside of my arm down to my elbow. I've never felt anything like it, the best way I can describe it is the shock you feel from putting a 9 volt battery on your tongue only its dispersed over the area of my arm. Very strange and I'm hoping and praying it goes away. I've been letting myself get down a little more the past couple days. This is hard, but I keep trying to remind myself I can do hard things. I can get through this and fight this. I know this trial I'm going through has been given to me by my Heavenly Father to make me stronger. 

Monday, April 14, 2014

Feels like I'm breaking out of jail

Today was the last day I spent in the hospital. It was also the first day I felt like leaving. I was scared to go home. The first part of my long journey towards a cure is now over. As happy as I am to be home I'm terrified of what comes next. Being in the hospital all I had to focus on was my recovery and managing my pain. My everyday life was put on hold while I was there. I was truly able to turn my children over to my husband, my mom and my dad. I feel so lucky that I did not have to worry about them for a second. Now that I'm home, my old life is taking place before me and all I can do is watch it go by. I feel so helpless. I wish I was the one fixing dinner and cleaning the kitchen. I want to go give my boys their bath and get their jammies on. I want to do everything I used to do and I can't. It's hard to think that our "normal" has changed. Me being able to do everything for my children is no more. All I can do is hope and pray is that this is temporary, and continue having faith that I will get well.


Still in the Hospital, Saturday, Sunday & Monday

Saturday April 12

Today I am grateful for modern medicine and for the opportunity I have had to stay this long in the hospital. I know in America I would have been sent home a few days after my first surgery, then I would have had to be re admitted for my second surgery. The fact I have been in Hospital this long has have given me a chance to heal emotionally and physically. I have had time to myself to pray and receive answers to my prayers. To feel comfort and love from my father in heaven.

I woke up Saturday morning exhausted. I don't know what is  going on, but I sleep a few hours at night and wake up for a few hours, then I will sleep a few hours more. Then when morning rolls around and the nurses come into open my curtains I feel like a teenager again when my mom or dad used to come in and open the blinds the get me up for the day. I spent the morning resting, in and out of reading, texting and sleep. I keep sending out random texts that I have fallen asleep in the middle of so they make sense in my head and I think i'm writing what I'm thinking, but I'm not at all.  Saturday evening my friends (Alex, Danielle, Eliza, Kristi, Marika and Georgia) came in and brought me Mexican food (the best you can get in perth...) and mini pavlovas (my absolute favorite dessert). We visited for a few hours and it was wonderful. I love and have felt so much support from my friends. I am so grateful for the church and the opportunity I have had to have an extended family here while living across the world. I truly believe the people we have met here were put into our lives for a reason. We have immediately felt a part of such a wonderful group of friends from the first week we arrived here in Perth. I don't think this is a coincidence. Heavenly Father was aware of our family and what our needs were going to be through this trial.

Sunday April 13

Today was again a very relaxing day. My pain is starting to subside a little so I have been able to go longer between doses of my pain medicine. I was able to  have one drain removed today, so that brings me down to 3 drains. It's so crazy when I get one out, they have become such a part of me that I can't describe how I feel as they are removed. I guess I the only word I can think of is relief maybe. Relief that my body is in fact healing from my surgery. This morning there was a knock on my door and it was our friend Rick. He came into check in on me and to visit. We sat and talked for over an hour and he really opened my eyes and made me realize the hand of the lord in us living here, thousands of miles away from our families while dealing with the hardest trial of our lives. So many have asked if/when we are going back to the US. The answer I have had for them every time is this is our home now. Although we know we aren't going to be here forever, we know we are meant to be here while we face this trial. Our support system here is in place and has been from the second we arrived.

Joe arrived shortly later to listen to conference with me. It was nice to see him and spend time with him. He's growing a beard now and I am loving it. He tell me he will shave it when I start loosing my hair. I'm not sure he will last that long, but we will see. My lifesavers, my parents arrived with the boys a few hours later. I am forever grateful to my parents. The boys have been able to stay completely in a routine and that's exactly what they needed. My mom asked Max if he's ready for her to go and he said no, then it will be lonely. I completely agree. I'm not ready for them to go. I wish I was able to spend time with them instead of sitting in the hospital. I love my parents so much, they are the best.

Monday April 14

I had a pretty good night sleep last night. I'm starting to wean myself off of my strong pain medicine. It's hard to know how much to take because I have been waiting until it was too late and then trying to catch the pain. As I woke up today I realized today was the day I wanted to go home. After talking with my doctor Friday I felt he was going to let me leave if I was ready. The only thing that was holding me back was my drains. I still had 3. I anxiously waited for the nurses to come in this morning to measure the drains to see if I would be getting any taken out. I didn't think the Dr would send me home with 3 drains, but I thought he would send me home with 2. Once they were measured I knew I was getting the last drain in my right side removed. I was so excited to get that drain out. It's the one that had caused me the most pain especially in the beginning. The rest of the day I kind of sat around waiting for the doctor. The nurses finally called him and he gave them the go ahead to let me go home, I was thrilled. The nurses taught Joe how to change my drains and filled me in on the home nurses that would be calling me daily and removing my drains once the draining slowed. The nurses will actually come to my house for my care of my drains. How amazing is this?! Joe and I had talked about how I needed my own reclining chair downstairs to keep me comfortable through my recovery and then through chemo. I would be able to be downstairs, be comfortable and still be a part of whats going on with the family. I would have struggled resting upstairs and hearing life pass me by. So we stopped on our way home and picked up the most comfortable recliner ever. I'm in love with it! It's good to be home, but it was definitely easier to be in the hospital.

Sunday, April 13, 2014

My love

I love this man of mine, he's the best!

Middle of my hospital stay

Wednesday April 2 

Felt really good today Mom and Dad and Joe came in for most the day and we face timed some of the family and friends. Kids came in after school this afternoon and it was sooooo good to see them. Porter actually does better than I thought he would about having me around,  he still lets mom or dad take him from me and he waves goodbye. I was still pretty sore, but could tell my pain medicine was working 

Thursday April 3 

Got into my chair for the first time today. It felt good to be sitting out of bed and seeing the world from an upright position. AM nurses were great, getting me situated with things and allowing me to sit and visit while my friends were there (Alex and Eliza came) They were the sweetest and Alex brought me the softest Peter Alexander pjs and a magazine and Eliza brought be a bag full of goodies. It was so nice to see friends and chat with them about what was going on back home. It is a good thing that I didn't actually knock myself out while they were there. I was having such a love hate relationship with my pain pump due to the choice I had of when to push my button. My friends have been such a help through all of this with meals, my boys and my parents, I couldn’t have done it with out my friends. After the girls left, I was really trying to figure out if the pain pump was the was to go. It made me feel out of control with my pain because I could push the button a every 5 minutes for half hour and feel great so I would fall asleep and then I would get on the other end of the spectrum and wake up in a ton of pain because I hadn’t pushed the button. I was nervous for this to continue into the night and that I wouldn’t be able to rest and per my plastic surgeons suggestion we decided to remove the pain pump completely and start taking strictly oral pain meds. I feel like we were able to get them sorted in the beginning and we were able to control the nausea because they would regularly pump my portal vein with zofran and another anti nausea drug. It went on like this through the night and I actually had a much better sleep, but continued to wake up every 2 hrs for pain meds and anti nausea. 

Friday April 4 

I was still quite nauseated and a lot more sore when I woke up today. My parents arrived for a visit and I was struggling with my pain and struggling with my nurses attending to me which was hard. It has since been brought to my attention that the hospital is trying out a new schedule that runs with less nurses. I was in a ton of pain with the drains that were coming out of my back on the righ. They were sitting on a nerve and every time I moved it would send sharp shooting pains like I was being stabbed in my back. Of course my mom and dad don’t like seeing me like that especially 3 days post op when I should be getting better not worse. In the middle of all this sweet Danielle and Kristi show up with beautiful flowers and not expecting me in pain because Alex and Eliza had just told them how well I was going. It ended up being a short stay for the girls, which I felt bad about, I wanted nothing more than to be in no pain so I could have hung out with them. I can remember pushing my nurse button in a TON of pain and having no one come for 30+ minutes. It was horrible. My plastic surgeon came in at one point and was glad I was off the pain pump, but was wondering why the catheter wasn’t out and when I told him the problems I was having with the medication he said okay, lets switch your meds then. This changed my life for the time being. I went from being in pain and sick to not in pain and having nausea only every so often which we were assuming was oxy but figured out later it was actually a drug called tramidol. I have completely since cut that out. It also made my dreams soooo crazy and I would close my eyes and see things and be half asleep, but dreaming. Worst dream I had was a snake one where I found three snakes and they were out of control throwing themselves at y family and wrapping around the legs of them and constructing. Also another dream was waking up outdoors in my hospital bed in a wind tunnel tent type thing. strange. Joe arrived once things had finally calmed down and was able to spend quite a bit of time with me. It was so nice to have him here so I had the help. 

Saturday April 5 

Joe came in the AM after dropping my parents and the boys off to the Fremantle markets that go on Friday Saturday and Sunday. He stayed for about an hour, then went to grab the boys and my parents, they were supposed to come back, but ended up heading home. Early afternoon my mom was delivered to me by a carful of men. Joe, Dad, Rick, Adam, Jordan and Cody were all headed to the St Kilda vs West Coast Eagles footy match. My mom was able to spend the next 4+ hours with me. It was soooo nice to have her here, we talked about things, we napped, we talked some more. The time flew by way to fast and when the guys called to say the game was over and they were on their way to get mom, I was bummed. All the guys came up to visit for a minute and it was nice to see them. Funny thing I remember is when they walked in I was wearing these purple purse looking pillows the breast care nurses gave me, one on each aren to keep my arms off my incision. I laughed when I realized that and immediately took them off. We had a good little visit. 

Sunday April 6 

I spent my morning resting, Joe came in the early afternoon with the older boys. We played Uno and I lost. We went on a walk and ended up at the vending machine, It felt good to walk around with them and I think it helped them to see that mommy was still mommy and I could get up and move around even if I did have bags on my shoulders filled with drains that are filled with blood and gross stuff (which they actually think are cool). We ended up getting each boy a soda and settled them on the treats I had back here (I’ve been well taken care of by friends) The boys laid in my hospital bed and watched a show. They had a couple rolls with butter which is their go to when they arrive ,they tell me they are hungry straightaway and that they want a roll. I save them in my drawer. Rolls, butter and apple juice after my meals. You never know when my kids will come in and I need to be prepared so I can feed them. Mom and Dad arrived with Porter quite a bit later so it was fun to spend time with the older boys with out the distraction of a little toddler. Once Porter arrives, there’s a window of time that the kids can stay. Porter is so cute through all of this. He tries so hard to reach out to me so I can hold him and I know I won’t be able to hold him for at least 4 weeks, this has been one of the hardest things on me when they come in. I want to hold and cuddle and snuggle my sweet boy. I miss changing him and feeding him and taking care of him. Alex came by for a visit as my parents were leaving with the kids and it was so nice to have her there to chat with while we ate our dinner. This night was the hardest night sleep I have ever had. I was so backed up and could not go to the bathroom it was making me sick. This continued into morning. 

Monday April 7 

Joe arrived after my breakfast of All bran and prunes. Nothing seemed to be working for me as far as the bathroom was concerned. It was bad! After about 2 hours we got things under control and figured out what worked. The crazy thing about hospitals here is your can leave your hospital ward and walk around the hospital, go outside and walk around, grab lunch at the coffee shop in the building next door. So Joe and I headed downstairs and out the front of the hospital. It felt so good to be outside and to have the sun shine on me. We grabbed some lunch and it almost felt normal until I looked down at my bags and realized there were still 5 drains hanging out of my body. We headed back right after lunch because Joe said I had lost all the color in my face, I guess it was a hard outing?… Once back in the room it was time to wash my hair, I had been showering daily with plastic covering my drains and my wounds, but had not washed my hair. It had been almost a week of me putting it off and I was ready to have clean hair . As he was pulling out my clothes for after the shower and laying them out for me, making sure my drains were in the right spot, making sure I had a towel, doing everything in he could to make it as easy as possible on me, it hit me. We weren’t supposed to be doing this until we were in our 80’s and we were old and frail. Here we were 31 and my husband was having to shower me. Joe joked that even at 80 he thought I would be the one showering him not the other way around. The depth of my love for the man I married grew so much today. After this experience I have really tried to take a step back and put myself in his shoes and have tried to really understand what he has been through the past 2 months. It had been exactly 2 months since he had lost his mom to cancer, the same disease I now have. He has had trials put in his life that directly effect the two women he loves the most. I can’t even imagine what he is feeling. I find so much comfort in knowing we have the knowledge of eternal families and I know that we are going to be with his mom again. I know he does too, but I think when you are watching your loved ones in pain and suffering it makes it hard to keep perspective. 

Tuesday April 8 

At this point my pain was very well managed. I was finally feeling regular, and I just feeling like all I needed was to get these drains to stop draining so I would be able to go home. Danielle, Kristi and Eliza came in around 11 and brought me a big mac and fries. First meal I had dated outside of the hospital food and it was heaven… i don’t even like McDonalds, but it sounded soooo good. While they were here Dr. Willsher showed up with my Pathology report on the cancer (see separate post for details on that) and basically told me the cancer had spread to one of the sentinal nodes so I would need to have my left auxiliary lymph nodes removed. He was scheduling the surgery  for the following day and I was to wait for his nurse to let me know the time. He spent a good amount of time with me going over everything, and I was surprisingly okay to have the surgery. I think at this point I’m feeling like all I want is my best cure so I’ll to whatever it takes so I can be here for my husband and my 3 sweet babies. After he left I called Joe and explained everything to him. He seemed concerned, but okay. He headed straight over to the hospital to be here with me. It was just so hard to go backwards into recovery and into my treatment. I got off the phone with Joe and headed into the lounge where the girls were waiting. We had a good talk about it all and I felt really good about 

Wednesday April 9 

So I woke up this morning and was only able to have a light breakfast since my surgery was at 2 pm. The nurses were extra stressed today and not helpful at all. It was very frustrating. The anesthesiologist told me I could drink clear fluids (water) until 10 am and I had been waiting for the nurse to come back to help me with my gown and to get me water finally I looked at my clock and it was 9:55 and I was so thirsty, the nurse was so annoyed when she came in and didn't understand why I was in such dire need of water she finally got it after I explained. Joe came in a few hours before surgery and we kinda just hung out. I was super calm when they came to wheel me into surgery and even when I went into the operating room. I couldn’t get onto the table this time by myself so they had to get a sheet to move me from my bed to the table. The anesthesiologist seemed to really address my concerns with the anesthesia, I didn’t want to feel nauseous when I woke up and I was really worried about being backed up again, that was terrible… I woke up after surgery in the post op room and just remember asking for water and chapstick and feeling better once I got it. They wheeled me back to my room and I was still pretty out of it. Once I started coming to, my mom, dad and Joe were there. I guess I was super chatty and couldn’t stop talking. Funny thing is there have been a few things since that night that have happened that I do not remember at all. The next day when the kitchen staff brought lunch around I guess I ordered spinach polenta and even asked joe to write large next to the typed name of the menu item so I could get an extra large serving. Who eats polenta? Seriously the other menu options were way better. I guess under drugs polenta sounds amazing? I didn’t sleep well at all this night. For some reason I was wide awake and I love the nurses that were on this night (Jenna and Blair) They are my favorite. We stayed up and chatted about the clothes, life, their work and the hospital. It was fun. They finally left my room around 3 am and both commented they felt like we were having a sleepover. 

Thursday April 10 

This may have been the loneliest day I had in hospital. No one came in the entire day and my surgery site was starting to act up and give me trouble. My left shoulder blade kept throbbing and popping and my left ribs felt like they were getting stabbed which I’ll attribute to nerve pain from the placement of my latest drain. It was a lot of taking pain meds this day and trying to get comfortable and couldn’t. Also a shooting pain started up at the top of my ribs, this only acts up when I stand up. From what I’ve learned now I think I have done way too much because of being here by myself for most of the days and not wanting to bother the nurses to reach for something. I was doing a lot of reaching behind me which I shouldn’t be doing at all and I’ve learned that the hard way. Joe came in around 4 and at this point I was grumpy. I was exhausted, lonely, worn down and in pain and really needed to be doted on. Of course Joe didn’t know any of this so I kinda kept getting upset and he didn’t know why. I had waited to take my shower for the day until Joe arrived so I could again wash my hair, so we decided to do that. As I lifted across my body with the arm that the lymph nodes were removed from, my arm just felt so heavy and kinda dropped bad into place. The heaviness and tingling scared me so much I started telling the nurses all about it. The nurses attributed it to the surgery I had, but I thought it had to be something. This was super scary. After my shower Joe got me settled and then had to leave for dinner with the family that our friend Danielle was making. At shift change when I met with my new nurse around 10 pm I explained to her what was going on with my arm and started checking it out saying that my arm was quite warm and the heaviness could be a sign of maybe lymphedema. I kinda freaked and called Joe and had a panic attack. When you already have a million things going wrong with your health the last thing you want it one more thing. I had a good cry and after she left the room I googled all about what to expect after that surgery and read all of the side effects which can at times be scary and turn into scary things, like lymphedema. Then around midnight, a second nurse comes in to check it out and completely confirms what the first nurse had said. At this point I’m in tears and they are telling me it will be okay that Sarah (the physical therapist) who is the absolute best will be in first thing in the morning. They told me she would fit me with a compression sleeve and we would go from there. They said not to worry that there were going to be times during all of this that I just need to have a good cry and that I need too break down. They said how strong I had been through all my surgeries and how positive of an attitude I had and that sometimes it was okay to just say this sucks. After they left my room I tried to get rest, I turned off my tv and sat her in the dark and with the help of the sleeping pills I took, I slept. Only for a couple hours, then I would wake up take pain meds, sleep a few more. I finally had a good night sleep. In the middle of the night I talked with people and posted something on instagram that I totally did not remember posting or writing the comment under the quote. Pretty funny to re read it the next day only to realize you don’t remember writing it. 

Friday April 11 

I was woken up this morning to Sarah the physical therapist being brought into my room by the night nurses. They had caught her first thing as it was only 7:15. She’s a tall asian lady with not much of an accent at all because she moved around a lot growing up. The first thing she did was come over to my left arm, touch it and say you don’t have lymphedema. I seriously wanted to jump out of my bed and tackle her with the biggest hug. She then told me that she would prove it to me. She put some electrodes on my right foot then my right hand and then my left hand. She moved the wired between my foot and my right hand then my foot and my left hand and showed me the result on her machine… normal, what a relief. Then she marked my arm up with a red pencil and took a measuring tape to measure around each section of my arm. She wrote down the results and compared them with the left side and said my arms are the exact same size. We went through the exercise I can be doing and are you kidding I can totally handle it. Before my drains get taken out, one set of 10 daily for each exercise there are 6. After the drains are taken out 3 sets of 10 daily. We went through how much I can lift, for 4 weeks only 5 kilos on my right side and for 6 weeks only 5 kilos on my left side. She also showed me the appropriate arm motions I can use. Basically no reaching across my body or behind my body or lifting my elbows above my shoulders. After she left I was in such good spirits I showered and got ready. I finally put on a little makeup and felt really good about my recovery at this point. I mean the numbness and tingling is still there, but after slowing down and not doing much with that arm it really helped the shoulder and ribs. My parents arrived with porter and he was so excited to see me. Gosh I love that boy, he is just a dream. Eliza also came in while my parents were there with a bag of sunshine for me. All things in the yellow bag were yellow. She seriously did brighten my day so much. After she told me some things that had been on her mind, I told her about my night that she had no clue about. The lord worked through her that day and I’m so grateful for a friend who listened to a prompting she had. It meant the world to me. My plastic surgeon came in and relieved me of another drain so I’m now down to 4 (2 on each side). My parents stayed a little while longer and as I walked them out Porter flirted with the nurses the entire time he was blowing kisses and waving at them and saying bye bye bye. They were in love with him. Joe came next so I sat and repainted my nails and pampered myself a little which was super nice. Alex and Danielle came next with lunch and then my sweet friend Linda came from school. She brought me beautiful flowers and much needed magazines as that’s about all I can read right now because of the drugs I’m taking. We had a nice visit and then all of a sudden the nurses came in and said did you know we are changing your room and moving you down stairs? I had not clue and I had a bunch of stuff in my room. Luckily I had all of them there. They were so sweet to help and set me up in my new room downstairs with no view:( The hospital closed the upstairs ward and combined the wards for school holidays because it’s generally not a busy time for this hospital. After the girls left Joe and I ate and I napped. It was my favorite day since I’ve been in here. I felt super good and I had lots of visitors:) That evening I asked my parents to bring up my boys so they did again. I just miss those kiddos. Tate whispered to me 3 or 4 times how much he missed me. Such a sweetheart. They all get so excited when they come in here. Max asks for a roll straightaway, Tate asks for candy, and Porter asks for me to pick him up. I wish I could give each of them what they want but I guess 2 out of 3 isn’t too bad.

They make my day

Every day I look forward to the times when Mimi and Papa bring these two in. They are the sweetest most gentle loving little boys to their me. I'm so lucky to be their mum.

My homemade drain bags

Patients that used to be in Hospital make these bags and bring them into the wards to hand out to patients. I have since upgraded to much cuter pink bags.

Filling in the blanks through April 3rd

The past few months have been the hardest months of my life. I've always been very sensitive to others in times of trial, but I can honestly say in my life I have been so blessed in so many ways that having to endure this trial only makes me feel like I can help others and be there for others in ways I wouldn't have ever been able to. I hope from the emails I posted you can get a just of what we have gone through. I'm going to refer a lot to "we" because what is going on with me is directly affecting my love Joe. I think sometimes when a cancer diagnosis is given it is actually harder on the spouse than it is on the person with the cancer. As far as where I'm at. I'm doing great. I know people a lot of times just say that, but my spirits are high and I really feel like everything is going to be okay. I have faith that I will be healed and restored to health as good as new (just with less hair). 

To fill in the gaps in what has gone on I'll write a little timeline.

Tons of appointments after my initial diagnosis, first breast surgeon we decided not to go with and felt much better about the second surgeon Dr. Peter Willsher. He's amazing and works directly with his wife Dr. Chen who is one of the top oncologists in Perth. Dr. Willsher used to do the entire surgery with reconstruction himself, but is so busy he now has a plastic surgeon come in to do reconstruction. Dr. Edward Van Beem is my plastic surgeon and he's great. He is all up to date on the newest latest procedures to get the best result so that's just what I wanted. If I have to get rid of the boobs I have my new ones better be pretty amazing.


Tuesday April 1

I was admitted to the hospital (I'll never forget April fools day) Joe and I headed to Mount nuclear medicine once I was admitted to get dye injected into my tumor that would show where my sentinal node or nodes were. The nuclear medicine Dr. Geoff is my favorite, he was telling us all about how the stuff he just used the FDA won't approve in America and the stuff they have over there is inaccurate and a shitty material. I was cracking up and a little nervous at his comments, not approved in America? I'm in a foreign country and I'm having surgery went through my mind. They inject the dye, we had to wait and then I laid down in the same machine that did my bone scan so they could take pictures. It's crazy, the die immediately lit up on the screen and you could see right where the node was he was looking for. He marked on me where it was and we had to wait another 15 minutes for more pictures. He marked again and that was done. Joe and I then went down and Joe had some breakfast at the cafe (I was fasting for surgery). After the final admitting process they brought me to my room and I had to get undressed and into a hospital gown. I felt so strange feeling so well, but actually being so sick. I also started getting anxiety about being in a foreign county in hospital. When they came to take me to Theatre (the operating suites are called Theatre) it was an hour late and I wanted it to be later. I wanted to tell the nurse that was wheeling me away that I wasn't ready. I felt the same way when i was wheeled into the operating room, I almost wanted to jump off my bed and run out of the hospital. I was going into surgery for double mastectomy with reconstruction using the latissimus dorsi flap. They use the lat dorsi muscle and bring it around to the front to create my new breasts. We only had to use a tiny bit of skin that will be used in my nipple construction further down the track. They also put in expanders for the reconstruction and gave them a small fill of about 100cc. These will be filled over the next 4-6 weeks until I'm the size I want to be. Kinda fun I get to choose. They also took out the lymph node that lit up in the pictures as well as one that was next to it. They did a quick freeze of these to see if there was cancer in them and they came up negative due to the short test. That's why they didn't do the auxiliary node clearence. The surgery went well and was a little longer than expected, 5 hours. I woke up and immediately threw up a few times and could feel my neck was super stiff. This lasted all in recovery all the way up to my room where Joe was waiting. It hurt really bad, like you have slept on your entire upper back and neck wrong x10. The nurses realized I didn't have my pain pump connected, seriously, I was mad. Once they figured that out I was great. I think I slept well that night.

Wednesday April 2nd

High on fentanyl. I came out of surgery with a pain pump of fentanyl which was interesting. Needless to say I had a great day Wednesday, I face timed with most of my family and some friends and that was great. It was really the first time I felt like talking to people. I was in denial and just trying to live my life ignoring it since my diagnosis that I think it just felt good to start treatment and do something about it.

Thursday April 3rd

Still high on fentanyl. This is the day that I figured out how the pump works. The day before I though I was getting constant medicine from the drip, and then pushing my button to get 1 mg more when I was in pain. The pump would give me that 1mg every 5 minutes. I could not for the life of me figure out why if I pushed the button every 5 minutes for 30 minutes I would feel so loopy and make myself pass out. I chose to switch over to oral medication for this reason and it was hard to get used to the balance between pain and nausea was difficult. I finally ended up with a goodnight sleep even though we were struggling with the pain meds.

Get Well Mum


After my second surgery

So surgery went well. It was about 2 hours and I only had to be in recovery for around 15 minutes. I couldn't lift my right arm for a little while after surgery so joe had to feed me my dinner. It went back to normal pretty quickly but was strange. I'm already feeling all the numbness under and on the backside of my upper left arm. This will get a little better but is likely to never go away. 

As far as how I feel I was able to come out of surgery and continue on the pain meds I had been taking and didn't need to use the pain pump. I was so grateful for this. I feel just the same as I felt going into surgery just with the massaging things on my legs to prevent blood clots and an extra drain that i only notice if I get up. Now I can actually officially say the hard surgeries are over which I am so grateful for. I love you and appreciate all your prayers in our behalf.

xoxo, Tori

Mount Nuclear Medicine

Waiting the 30 minutes until I can get scanned again to find the sentinel node on my tumor

Pathology

Well the Pathology came back. 

There is a 2.3 mm deposit of cancer in one of the two nodes. This means there's a 20% chance of cancer being in the lymph nodes under my arm. 20% is too high a risk not to take them all out, so I have surgery tomorrow to do just that. Effects from this are numbness under armpit extending down a little under my arm and nerve pain. 

They also found the tumor is HER + which means the cancer is a more aggressive type of cancer and so during surgery the dr will install a port right above my right breast that will make it easier to give me my treatments for that type if the cancer. The medicine for that doesn't really have side effects but it will be administered through the port every 3 weeks for the next 12 months and will be started when I start chemo. Cost for this treatment is $50,000... I'm pretty sure it will be covered, but seriously! Crazy 

I have a Stage 2 cancer and the cancer is Grade 2 (which means it's not that aggressive yet) it is considered according to pathology to have both ducal and lobular properties. 

They also they got clear margins on everything and there is no cancer in the right breast. 

The cancer started just behind the nipple and then branched out in 2 areas (multi focal) creating 3 tumors the largest being 18 mm The tumors are Oestrogen positive 70% Progesterone positive 60% We will use hormone therapy to treat this aspect of the cancer Radiotherapy we don't think I will need because the cancer is not vascular yet. Dr will look a little more into this, but he doesn't think we will need it. 

Chemo will likely be for 4-6 months, I have an appt with the oncologist on the 23rd. I love you all so much and want you to know I feel all of your prayers. I have such a sense of peace and comfort in the midst of what's going on. I couldn't ask for better friends and family and we are so blessed. 

Love, 
Tori

Second email

So, bad news. I have breast cancer, they are pretty sure it's invasive ductal carcinoma.... you've got to be kidding me. So far things are looking good though, they think they caught it pretty early. I have a bone scan and a pet scan scheduled for the morning just to make sure it hasn't spread anywhere that they can see. I will have a mastectomy... seriously, sometime in the next few weeks. Right now the biggest decision I have to make is whether to have a single or a double one. I just don't know what to do. Too much information is being thrown at me and I feel like i'm not processing it at all. This is all super surreal. In most of my research having breast cancer basically means I'm going to be forced into not having any more kids. Of everything that has been the hardest thing for me to take. Being forced into it when you really want another sucks! I have cried the most tears over that, but I really do think things are going to be okay.. Hard, but okay. 

xoxo, Tori

First email I sent to my family



Hey Everyone,

I know that this is the last email you would ever want to get, but I've thought about it and I feel like this is the easiest way for me to relay what's been going on to you. 

So, around the first part of december I noticed something strange about how my left breast was feeling. I kinda thought it was maybe something to do with stopping nursing....? Wasn't really sure. It was just like a thickening on the right side of my left breast. Anyhow, since it hadn't really changed right when we got back after our last trip to the states I made an appointment with my GP (general practitioner) here. That appointment was last monday and he was pretty sure it wasn't a big deal, he thought it was a fibroadenoma, but sent me in for a breast ultrasound and if it looked sinister to get a biopsy on the area. I went in for that appointment on Thursday and the Dr. did the breast ultrasound and didn't really like what he saw and knew he wanted to biopsy what he was seeing so to get better pictures sent me straight into get a mammogram. My mammogram showed 3 spots (possible lumps?) that were of concern to him, not wasting any time he took biopsies of the lower spot and the upper spot (roughly at 8 o'clock and 10 o'clock). They are very concerned about the way it looks, but the pathology has not come back yet so, please don't worry a ton... it will just stress me out more. They didn't notice anything in my lymph nodes (which is really good). Results probably won't be back until Tuesday or Wednesday here. There is a rush on them but they usually take 5 working days. I have an appointment with a breast surgeon monday because even if it is not cancer I will need to have them removed. I already told mom and dad, but other than them, you are all the first to know and are all being told through this email. Joe and I and mom and dad will be fasting this Sunday. I have a really bad feeling about this, but I'm trying to stay positive, so please pray and fast that this isn't cancer and if it is that it isn't anywhere else. I will do everything I can to fight this if it is, but it's scary and I seriously can't even believe this is happening. I know you will want to call and talk, but seriously just email me. It's way to hard to talk about it multiple times. I love you all so much! 

xoxo,
tori

Perth Radiological Clinic

Before I knew about the cancer. This is me trying to figure out what way this hospital gown goes. I already had it on backwards and had to change it. 

My Diagnosis

The first part of my story begins in December of 2013. I noticed a change in my left breast. The best way I can describe it is a thickening, not a lump. After finding this, I was a little concerned so as I stood in the bathroom mirror before getting in the shower I lifted my left arm and under the thickening was a little rippling. My best guess was it was is a clogged milk duct or some sort of mastitis even though I had stopped nursing about 9 months before I read that this was quite common to still be producing milk. I made Joe aware of it and we both thought nothing of it because of my age 31 and we don't have a family history of breast cancer (which by the way only 20% of breast cancers are hereditary, which was shocking for me to learn). I decided to wait for it to go away. 

In October our family had just taken on a new adventure as my husband accepted and opportunity with his job to move to Australia. After our big move across the world we were looking forward to taking a trip back to America for Christmas to celebrate with our families and especially to spend time with Joe's mom as this was going to be her last Christmas. We thouroughly enjoyed the Holidays and made some priceless memories with mom. By the time the middle of January rolled around it was time for the vacation to end so we could get back to real life at home. Our boys were still on summer break and looking forward to getting back to school and starting year 2 (2nd grade) and Pre Primary (Kindergarten). 

I thought of the thickening often, and googled a lot about what it could be. I was still just waiting for it to change and go away. Even from my research I went on thinking it was nothing to be worried about. 

Two weeks later and in my boys first week of school we received word that Joe's mom's health was declining and we should head back to California to say our goodbyes. We spent the next 3 weeks in America surrounded by so much love, but experiencing one of the hardest things we had ever done, saying goodbye to our amazing mom. 

After arriving home from the states, I knew it was time to make a doctor appointment to get it all checked out. It was a Monday when I went to see the doctor. At the appointment my general doctor told me he thought it was a fibroadenoma (non cancerous tumor) and didn't seem too concerned. To be on the safe side he sent me to get a breast ultrasound with possible pathology if they found anything sinister. 

The day of my appointment Thursday I woke up and went alone not thinking anything of it. Joe was out of town due to be flying in that evening. This is how sure I knew it was nothing, I would have never gone by myself had I thought it was something. I waited in the waiting room then changed into a gown and of course put it on backwards so had to change back. I then was taken to the ultrasound room and laid down and watched the screen as the doctor preformed the ultrasound. From the words he was using to the nurses I could tell he was concerned about what he was seeing, He explained to me that he was actually seeing 3 tumors and not 1 and explained to me why it felt the way it did. He told me he was going to need a fine needle biopsy and in order to properly do this he needed more pictures from a mammogram. I was still super calm and unsure what to think when I went into the mammogram to have my boobs squished between a cold machine. I actually had to go to the mammogram twice to get a couple more photos of my left side. Once I was back in the ultrasound room I was starting to panic a little. I was fine until the two nurses in the room asked me multiple times if I was okay. I remember a few tears streaming down my cheeks out of fear. The doctor came into the room and numbed the area where he was going to inserting the needle. He then took two samples one from the top tumor and one from the bottom tumor. The second biopsy stung and hurt terribly. Through all this I just laid on the cold table with my gown on and my breast being poked a prodded. My eyes were open and I was staring at a hideous flower picture to my left so I wouldn't have to see the needles they were placing in my breast. This is when it hit me. My boys flashed before my eyes and the tears started to come. I realized at the moment that I just didn't want to die, I needed to live for my husband and my kids. I was scared. After the doctor finished up he very sweetly asked how I was doing and explained how fast this was all happening for me. It was. I had been in the office for a total of 1 hour at this point I the tears started to flow. I didn't understand how it happened. He explained how the the tumors looked very suspicious of cancer and that my next step is to meet with a breast surgeon.It really got me when he told me if the results came back clear that he recommended I ignore those results and get further testing. It was then I knew it was cancer. The doctor walked me out of the room and into reception making sure I was okay, which I really appreciated. I was able to hold it together while I paid for my appointment. 

The second I realized I had to call Joe who had just lost his mom to the same stupid disease I now had I lost it. He didn't. He was so calm and reassuring and I'm beyond grateful for that. He calmed me down so I was able to drive. I lost it again when I went to pick up my sweet baby who was playing at the park with my friends. My friends were shocked they couldn't believe it and kept reassuring me that we don't know yet. I held it together once I picked up my boys and I ignored the housework and things that needed to be done and I did what they wanted to do. I held them tighter that day. 

The next few days were a blur of prayer and fear and research and comfort. They were full of every emotion you can think of. Joe came with to the general doctor appointment on Monday March 17th to receive my final pathology and my referral to the breast surgeon. I was so glad he was there. When we walked into the doctors of is he told us they found malignancy in the tissues thad were sampled. I had a invasive ductal carcinoma. It was a multi focal cancer with the largest tumor measuring around 1.9 cm. I took the news quite well because in my heart I already knew what he was going to say. I knew I had cancer while sitting in the ultrasound room.